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One year follow-up valcyte, colchicine, and doxycycline

Discussion in 'General Treatment' started by Butydoc, Jan 21, 2014.

  1. Butydoc

    Butydoc President

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    One year follow-up with valcyte, colchine and doxycycline
    Blog entry posted by Butydoc, A moment ago.

    Edit Title
    I'm a 61 year old health care professional who developed acute onset of virally induced cfs approximately 11 years ago. I was treated for 7 months with Valcyte under Dr Montoya's supervision. I never fully recovered and had to stop the Valcyte secondary to severe since effects ( actually felt my cfs was worse). I seemed to improve for 6 months following the cessation of this drug and returned to work. Since then, my condition slowly deteriorated until I had to retire from my career on 9/28/13.

    I began seeing Dr. Montoya again in late December where I began on a low dose of valcyte (225 mg/ day). This dose was increases to therapeutic dose of 900mg/day over a 2 1/2 month period. Colchicine was added to my regimen at 9 mg/day for the past several months as an anti-inflammatory drug. Over the past 4 months I was started on doxycycline because I had reached a plateau and my mycoplasma pneumonia titers were high. It is note worthy that I tolerated all my meds very well because I started at a low dose and gradually increased it until the drug was at the therapeutic range.

    My health has improved greatly from spending 50 percent of my time in bed to be able to ski again at a advanced/ expert level without crashing. I still have good and bad days but much less severe bad days and much improved good days. I now have episodes where I feel completely normal. This is the first time in 11 years I've had these feelings.

    Things I did differently compared to my first time being treated.
    1) I retired
    2) I don't push myself unless I feel good
    3) I'm better at reducing my stresses in life
    4) I exercise regularly in a very controlled fashion
    5) my sleep habits are a priority and are consistent.

    I feel this drug regimen and my life style changes have had a very strong positive effect on my health. I'm scheduled to see Dr. Montoya at the end of Feburary. If anyone has question for Dr. Montoya, I would be happy to relay them to him.
     
    melamine, NK17, justy and 8 others like this.
  2. ebethc

    ebethc Senior Member

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    @Butydoc - What was your experience on colchicine? did it help with pain by bringing down inflammation? how were the side effects?
     
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    @Butydoc did you find Colchicine have any effects on your neutrophil counts.

    Reading your post again it definately reminds me that rest is important also and that retirement has made a big impact also. Im finding this more and more as i continue to work as it makes it a juggling act.
     
  4. Thinktank

    Thinktank Senior Member

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    Also very interested to hear more about colchine and it's effect on your inflammatory markers (if measured).
     
  5. justy

    justy Senior Member

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    This is great news! happy for you.

    I had problems with Doxy - caused widespread body itching (no rash) and this is presumed allergic reaction by my GP. Annoying as I have Cpn and breathing problems and it helped with the breathing issues immediately - perhaps acting as an anti-inflammatory? my PEG2 is very high so I guess this is likely. My doc wants me to try another abx in the same class, but i'm wary of this as I had thought that allergy could be to all drugs in the class.

    After years of pushing and crashing I am finally trying VERY hard to rest in bed nearly all the time and not to get up and start cleaning and cooking and pretending all is normal just because I feel a little better.

    If I rest ALL THE TIME I always feel quite a bit better. Its just once I start to do NAYHTING that the problems start. I really wish I could exercise as im sure that when I was only mildly affected it helped to do some exercise (light yoga or swimming or walking) but now I cant even do stretching without crashing and a walk around my garden once a week can still be too much.

    Montoya im sure is a great Dr - I start treatment with De Meirleir next week...
     
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  6. Helen

    Helen Senior Member

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    Thank you for sharing your story, and I am happy to hear that you have recovered as much as you describe.

    - May I ask how high mycoplasma pneumonia titers you and Dr. Montoya considered should be worth a treatment trial with doxycycline?
    - What dosage did you consider as therapeutic, as there isn´t a consensus about this? Some doctors claim that 200 mg daily has only a bacteriostatic effect and that you will need much more to get a bacteriocidal effect.
     
    NK17 likes this.
  7. Butydoc

    Butydoc President

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    Hi Ebethc,

    About 4 months ago I stopped all my medication secondary to elevations in my liver enzymes and decrease in my creatinine clearance. I've held on to my gains and possible improved. Pain was never a significant component of my disease.

    Best,
    Gary
    Hi Thinktank,

    I haven't had any inflammatory markers measured. I'm not sure that would change my present care despite any of the numbers being high or low. I will be seeing Dr. Montoya in January. I'll write a follow-up then.

    Best,
    Gary
    Hi Helen,

    My titers for M.pneumonia were 1:512. I had reached a plateau on the Valcyte and colchicine and asked Dr. Montoya if I should try treating this high titer. He agreed it was worth a try. I seemed to have a fairly positive response to the doxycycline. I took 100mg twice daily. For me, a larger dose didn't appear necessary.

    Best,
    Gary
     
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  8. Helen

    Helen Senior Member

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    Hi Gary,

    Thank you for your reply and valuable information.
    I wish you further progress, and also thanks for being a part of the forum board.

    Best,
    Helen
     
    Sushi and NK17 like this.
  9. antares4141

    antares4141 Senior Member

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    Truth or consequences, nm
    Thank you for sharing!
     
  10. antares4141

    antares4141 Senior Member

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    Truth or consequences, nm
    My dad's retired doc, internal medicine. I recently had an abscessed tooth and started a course of abx. I reacted badly when I first started them had to stop for 2 days. Started again and was shocked at how much they relieved my symptoms. Post exertional malaise, brain burn, fatigue, fybro soft points, problem solving ability. I tried to explain to him the rituximab trials and the positive results also cut and pasted your post here. Want to get him to prescribe me the valcyte. Tried to get him to write me a scrip for doxy. He said he loves doxy but want's to keep me on the amoxicilan. And that "antidotes" don't impress him. My concern is that all these medications take a toll and if not administered properly all the ground I gain might be lost. His concern I guess is from a point of conservatism. How will you know the antivirals even work when your taking the abx? Any suggestions on how I could persuade him I need to be more aggressive with this if I want it to work? I've been sick now for 18 years and never took abx cause I was convinced I could just avoid mold and get better. I no longer believe treating an illness such as this is all that simple. Maybe I have lymes and the abx will work I never was tested. I kind of doubt it though. I suspect this beast is in a category of it's own and that there might be a viral component to it.

     

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